Earlier this week I was called at home by someone doing
some research on behalf of the MS Society. They wanted to get some feedback
about various services that I'd accessed.
Now obviously I'm DOWN WITH THE CAUSE. But they called at
half-past six. I'd not long come back from work, my parents had just brought Evie
home after looking after her all day, and we were in wind-down before wine-time
mode.
So I asked if they could call back. They said fine.
At half-past six the following night they called
again, right in the middle of the wind-down once more.
I explained that I'd been through this the night before and
that I'm more than happy to do any survey for the MS Society, but could they
email the questions to me?
No, it had to be done over the phone.
I explained to the (perfectly lovely) caller that this
wasn't ever going to be a good time of the day to speak. Work, child, etc.
It's
(mostly) a finely-tuned machine (sometimes).
So she said (again, she was
perfectly lovely about it), "Ok, I'll call you in the morning".
To which I replied, "But I'll
be AT WORK".
I'm probably being insanely
over-sensitive. And I know the society published findings which said
that “It is estimated that between 23 and 32 per cent of people with MS are in
employment”- so basically only a quarter of us are still in any kind of work.
But still it saddened me that
the person calling - on behalf of the MS Society (not from them) - would make the
assumption that, if a person has MS and they're talking about work, there's
NO WAY that work will be full-time.
I've been a bad mood about this
ever since - if this is the attitude of people working in the name of one of the
biggest MS charities in the UK, will the fact that people with MS don't feel
able to remain in employment become a self-perpetuating prophecy?
People who are newly diagnosed
could read these figures and go, "OK then, I might as well give up
now". And I do appreciate that some people have a considerably
greater level of disability than I do currently.
But still, it's not
THEIR FAULT that they're disabled.
What
is society going to do to make them feel that they have a RIGHT to contribute
and be fulfilled, doing whatever it is they want to do? *
In my head I keep going back to
the different models of disability - it's not the individual's fault, it's the
Disabling World.
(* the irony is that I HATE work, have never a had a completely
fulfilling job, and would happily jack it all in tomorrow if my numbers came up.
But still... Raah!!)
I'll stop working when they stop issuing plush anniversary box-sets of key musical-texts of my young adult life - it's not going to buy itself now, is it?
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How many people who work for 'disability 'or 'illness' charities actually have the eponymous 'disability' or 'illness'?
ReplyDeleteOnce listened to the radio programme 'In Touch' for visually impaired people and was stupefied to learn that (at that time-before I'm sued) there were no, you know, visually impaired people working at the RNIB.
Maybe the same goes for the MS Society or perhaps the perfectly lovely caller had a fixed number of calls she had to get a result from.
Hurrah for shift.ms.
“It is estimated that between 23 and 32 per cent of people with MS are in employment”??
ReplyDeleteFuck. That's a depressing statistic... but I'm calling bullshit. I know that lots of people are terribly affected by MS - of course I do - but I find that number very hard to believe. So there's something like 100,000 people in the UK with MS, right? And we reckon that only 25,000 of them are in work? MS is such a nuanced condition that is both cumulative and different in everyone. How can they be so confident of that stat? I think it does more harm than good to toss numbers like that around
FWIW, I think you're being a little over-sensitive too. They try to deliver parcels to everyone during the day too, even though most of us are at work. I think it's a statement about how brainless most of these organisations are generally, rather than a reflection on anything else.
As for boxsets....I'm hungrily eyeing up the Blur boxset and notice that Suede are re-releasing their albums on vinyl this month too.
ST
yeah, my bad - over-sensitive to a fault, that's me!
ReplyDeletei think you hit the nail on the head with this:
"They try to deliver parcels to everyone during the day too, even though most of us are at work. I think it's a statement about how brainless most of these organisations are generally, rather than a reflection on anything else."
apologies for venting, it's probably because the Slint box-set i linked to is SO BEAUTIFUL, and it's so very expensive!
i swear that statistic is true - they talked about it a lot during MS Awareness Week last year - and the MS Society is redoing the Working Yet Worried toolkit and that stat is part of the proposal - see http://www.mssociety.org.uk/ms-research/projects/services#8